She is on hospice. I called the hospice nurse. The social worker came by and the nurse and talked to Dad. At this point, they said that they will continue to educate him. She also has a BIPAP, but is fighting on using it. It was prescribed for nighttime useShe says that it causes her to breathe deeper than she is accustomed to doing even before ALS reared its ugly head. Plus, even with the head strap and chin strap done snugly, she said that it woke her up in the middle of the night because it was making her lips do like a "motor boat" kind of sound while she is sleeping. She has the mask with the nasal pillows because she said that she find it easier to breathe through her nose than mouth and has always kind of "freaked" when her nose and mouth is covered kind of thing when she was much younger. She thought the mask would feel that way and that is why she opted for the nasal pillows. Her pulse rate has always been on the low side. If it went above 70 when she was at rest, it was a rare time. Her temp has also run in the normal body temp range. I know that the urine is dark both due to the fact that try as we may, sometimes she just does not want to drink much, so I try to make up for it by using the baby foods (yes, I know we can use a blender, but Dad is just not the cooking type--blender would be challenging for him--it took me quite some time to get him to get a phone that wasn't a rotary one and a colored TV)--not good with change.
trfogey--I have been handling a good 95% of everything up until recently(care, laundry, legal work, dr appt, insurance, banking). I just couldn't do it alone any longer. I am working part-time during the week and raising 2 teenagers. I have one set of caregivers coming in for 12 hrs/week to help out, I have a hospice volunteer during the day for two days a week for 2-3 hrs each of those days. I have a hospice aide coming in 3 days a week and a hospice nurse coming in 3 days a week. I just hired another person to pad in some areas during the day. I am trying to make sure that there is someone there during the day while I am at work with Dad to help out.
kmedsley--Yes, she does get cold. I have offered to get a lightweight blanket for her, but she doesn't want it because it is too heavy for her and she can't move it. God love her, she wants to try to do things for herself, and if she doesn't want the blanket, well, I have a heavier sheet and I turned on the oil furnace to keep it 70 in the house at all times.
Thanks, Al, for the link. Father-in-law died suddenly and didn't progress like my sister so I am in uncharted waters here. I know "about" what to expect, just not sure of what indicators I need to watch for to perhaps call the chaplain in to come and speak to my brother and Dad. I know neither one of them have been the same since my Mom passed away.